Steroid tapering

[purplesprouting]

I was diagnosed with PMR January 2023 my initial response to steroids was like a miricle...My journey has been very rocky with trying to reduce steroids and 7 mg seems to be my sticking point. I have now been following the 5 week tapering and got through 8, 71\2.to , 71\2 during which I had had some bad days but thought ok from Saturday I started 7, 71\2 but have been getting increasing pain, today I feel exhausted with pain in shoulders arms and hips. This is the 3rd time on my journey that I have reached 7 mg and had what I think is a flare up ???

Please can anyone help of advise where I go from here

[DorsetLady PMRGCAuk volunteer]

7mg is very often a sticking point - adrenals need to come into play again, but would say yours is likely to be too low a dose for your PMR. To get to 7mg within 8 months was quick….too quick.

Even with a slow taper, if you go below the level your illness needs, you go below it… end of!

So really

a. you should have returned to 8mg on first taper, and stayed there for a while, and

b. you shouldn’t never started a reduction without being 100% sure correct dose is enough.

Follow the advice in this link re flare - [taking 8mg as the last dose you felt okay] -

healthunlocked.com/pmrgcauk...

.. and returning to 8mg… stay there at least a month - and then recommence tapering providing all okay…. And make sure at all times your current dose is enough before you embark on tapering - whatever method you use…

Your PMR lasts a lot longer than many doctors think or guidelines state. My advice , listen to your body, not watch the calendar….

[purplesprouting in reply to DorsetLady]

Hi, thank you so much for taking the time to come back to me....I will return to 8mg and take your advise to go slower on tapering.

Unfortunately I am not getting help or advice from my GO so really appreciate being part of this group.....

Thanks again

[DorsetLady PMRGCAuk volunteer in reply to purplesprouting]

Why we are here…. 😊

[Gossiplady in reply to purplesprouting]

Hi purplesprouting! Just to say you are in the right place for successful advice on this forum! I could never have managed over the last two or so years without them. Keep strong and smiling. We will win in the end.

[purplesprouting in reply to Gossiplady]

Thank you for your support

[PMRpro Ambassador]

Stick at 7.5mg at the very least, preferably 8mg, and take a holiday from reducing. When your body rebels more than once at the same dose, it is telling you you have arrived at your destination for now: the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did. You aren't tapering relentlessly to zero - you are finding the right dose for you. It doesn't mean you won't get lower, just not yet, In the meantime you aren't taking too much and are reducing the risk of adverse effects due to pred.

You can't expect much from the GP - they haven't had it and at best only knows what the textbooks say: start pred, taper the dose to zero and that takes about 2 years. Which sounds very simple but PMR isn't a one size fits all diagnosis and it doesn't last only 2 years.

[purplesprouting in reply to PMRpro]

Hi, thank you so much for your reply, I will go to 8 mg and think that the break from tapering is a good idea I will let my body have a rest and adjustP.s my GP says I should taper by 1 mg per month and rise the bad days, looking into Crystal ball said this should all be over by Christmas 2023 😂😂😂

I am so grateful to have found this group, and will look forward to a less rocky future road

Thanks again

[PMRpro Ambassador in reply to purplesprouting]

Ride the bad days eh - ah well, the odd one maybe, as soon as there are more than 2 together that is your warning!! And another with a dodgy crystal ball ...

You might be surprised by how much difference taking the stress off by not tapering for a few months can make.

[purplesprouting]

Thank you for your kind comments and helpful advise

[piglette]

As the others say 7mg seems to be a sticking point. Also getting to that point in nine months is pretty good anyway. Just pamper yourself and smell the roses.

[purplesprouting in reply to piglette]

Thanks for your support